Published on 12, July, 2020
That's the best word for it, really. Scared. How I've always been. Scared of change. Scared of the unknown. Scared of my own shadow.
Following mum's passing in April, it was time for a lot of rest, recovery and reassessment. Everyone advises no big changes after something like this, and I wasn't especially planning any. But I wanted some certainty about my future. That was, and is, important.
My employer had terminated my full-time contract because of the length of time I was off - but they offered me a zero-hours bank contract, which was better in many ways. Pick and choose my hours. More flexibility. The downside would be working sometimes in areas of the business that don't appeal to me and I wouldn't really enjoy. I like day services. I like a 9 to 5 routine.
That's why I jumped at the chance again when I saw the local autistic trust advertising for a day support worker. Just 4 days a week, but still doable because it was a higher salary. Specialising in care for autistic people. Activities largely based around community involvement. All things I like. They interviewed me on the spot (they'd offered me a job last year, which I had to turn down because of mum, and they remembered me) - and they offered me the job straight away. Great. The stability I wanted. Change and having to get used to new people - but it all felt positive.
The downside was traveling (I could cycle to the old place) and the need to get a car because of the location. I picked up a car yesterday. First time I've had one for many years, and in some ways it's good to have that mobility and flexibility again, and not be tied to bus timetables and long bus journeys. Another big change for me - but again, it felt positive.
Until last night. We all know about 'middle-of-the-night syndrome', I guess. Waking at about 2.30... and suddenly finding your head full of crap! I laid there for about two hours, churning it all over, trying to use the techniques I'd been taught in CBT to diminish the anxiety - the fear. It worked to some extent, because I eventually managed to get back to a restless form of sleep. Wake-sleep would be a better way to describe it.
As usual, I was 'awful-ising' it all. What if it I don't like the job? What if I have problems with the car? What if I find it harder than I thought to get by on the money? (take-home will be on a par with the old place, once I take out traveling costs) What if? What if? What if? And then, on the other side, there was the old job - and the positives. A known quantity. Nearer to home, so no need for a car. Fitting right back in. And I was happy there - happier, really, than I've been in a workplace for many years. I used to cross the threshold to the park in the mornings (it's a huge estate) and feel.... safe. Protected. Happy. The downsides could probably be managed in such circumstances.
This is how it always goes. I suppose it's the same for everyone, ND or not. But there are a lot of factors at play with me. Is this too big a change, too soon? Is it right? Of course, I can't know until I try it. Of course, too - the thought that got me to sleep in the end - if it doesn't work out, I can always re-apply to the old place. They said they'd take me back. Then I can go back to how I was, sell the car again, etc.
I know I need to stretch myself and broaden my horizons. Lord knows, in recent years, I've closed myself in a bit.
Maybe I've answered my own questions. Addressed my own fears - to some extent, anyway.
I just wish this anxiety - which is like a living thing in me now - would go away.
Thanks for reading.
Tom
I have been looking at this thread for a few days. I think you are very brave and am sure your experience will be invaluable. I had carers for a while but they had no understanding of autism/Aspergers ND issues but I wasn't diagnosed then but would have made such a difference if they had. Hope it goes well and is one of those "this is the right thing for me" moments.
There is so much in it that is common with me. I am scared and anxious too especially the I'm struggling now what will happen in the future variety. But I keep telling myself to just deal with now.when my parents retired at 70 and therefore had to leave their tied home I had to leave the only place I felt safe in. The village and fields and trees were familiar and it was home. I have lived in this house 17 years in a small town but still doesn't feel home or the right place for me but I can't go back to where I grew up because it has moved on and changed too much. It's not like you said Martian Tom in some ways but it is in others; few local voices or people live there now ( they can't afford to), the farms in the village are gone, the paddocks are filling up with houses, and street kerbs and speed signs make the village ugly. I lost my last job due to ill health a few years ago and not got back to work since. It makes me feel inadequate and guilty because I'm not doing my bit and not trying hard enough. 3 years ago my mum died after we nursed her for 2yrs at home. I was helped enormously by CRUSE phoning me regularly for months. She was more my rock than I ever realised and I still miss her and grieve for her. My dad is still in the same town so we muddle along. But like you said Im here because they were/are and I don't know what I'll do when that's not a reason to be here. I do lots of awfulising/ over catastrophising and the night time is a prime time for that. I have had moments of happiness and certainly not all doom and gloom but I cannot remember the last time I could say I was happy in normal everyday living. The main places I feel happy are in the middle of nowhere on holiday/house sitting. There is something soothing and creative about being surrounded by nature. But sensibly I have to stay where there is “access to services “ because sometimes I can't leave the house or have energy to do things. I would love to have a dog but don't for the same reason. I have been invited to a friends celebration but it is a long way away. This would involve a journey on an unfamiliar route, to an unfamiliar place, to stay in unfamiliar accommodation, to then mix in a large group only knowing one or two people. Each of these things has become harder for me until I have boxed myself in as I just find they make me extremely anxious and then exhausted and sometimes think an even keel is preferable. But then if I don't go out of my comfort zone what's life for if I miss out on a variety of experiences just because I'm too scared to try and fear of being overwhelmed and what I'm going to break or inappropriate thing that Im going to say as usually happens.... even anxious about posting this but if you guys don't understand who will? Thanks
Misfit61 said:I have been invited to a friends celebration but it is a long way away. This would involve a journey on an unfamiliar route, to an unfamiliar place, to stay in unfamiliar accommodation, to then mix in a large group only knowing one or two people. Each of these things has become harder for me until I have boxed myself in as I just find they make me extremely anxious and then exhausted and sometimes think an even keel is preferable. But then if I don't go out of my comfort zone what's life for if I miss out on a variety of experiences just because I'm too scared to try and fear of being overwhelmed and what I'm going to break or inappropriate thing that Im going to say as usually happens.... even anxious about posting this but if you guys don't understand who will? Thanks
Totally identify with this....i too feel calmer surrounded by nature....I like the feeling of space it brings, that it lives and exists so simplistically and beautifully, and it helps to ground me.
i too live in that paradox of wanting to experience so much..,but am hampered by my own fears and anxieties.
i have a bucket list of things I would love to do and experience....but am unable to voice these to others in order to ask for help/assistance so that they can actually happen....maybe I fear that these, when realised, would just end being disappointing events as I would spoil their potential myself due to who and what I am.
a great post misfit61.....humbled....
Thanks. Yes that's it exactly.
Sound advice....like with everything...I guess it is about getting the balancing act right....
I think it is double edged like most situations. It seems we like to help and offer support to each other and share information that might be useful to someone else as it's not easy to know where to look. But yes it's good to feel of use too and also again as you rightly say it can be knackering giving of ourselves communicating. However .. it's definitely worth it. Knowing that others up and down the country and in other countries are tuning in is just comforting. Together we stand divided we fall kind of idea.. and when I feel rubbish reading about other real people helps. And the positive, funny, everyday shares offer glimmers of light and hope.
Does it make you feel better though...or is it just a distraction....
sorry....I'll go back under my rock......
Do you think we "give" because it is our way of trying to be accepted and needed by others...."I have value", "I can help"...."please don't disregard me...I DO have something to offer"
as well as being far too empathic sometimes for our own good....we might not be able to communicate very well.....but boy do I FEEL
ho-hum....
I met a woman for real a few weeks ago and we met again last week, it's been really helpful, I'm grateful she made time for that. I didn't even know other people I had something in common with from that point of view do exist. I tend to hate myself for lots of little things, even if they aren't causing any problems to others but people suggest it's unacceptable anyway because it's different somehow. So having met this woman has definitely helped with accepting myself a bit more. We are quite similar in many ways, quite different in others, but even the differences seem to fit in some way. Unfortunately I'm leaving now, but meeting now has told me that it's really worth making some effort to meet some real people with similar issues. Hopefully being close to the capital will help with that. It was some wellbeing service here that gave me her number - she is on some boards regarding autism diagnosis and support but despite this it took a long time until someone suggested getting in touch with her. Not sure if others didn't know her or if it hadn't appeared to them that meeting someone who sits in a similar boat may help (although I had asked for exactly that). I'm really glad they did tell me about her in the end. Unfortunately they are not allowed to get service users into contact with each other. I can see that this would need to be done really carefully but it would probably help quite a few people - we just don't seem to know of each other and the very way we are isn't making it easier to find each other...
Thanks It doesn't feel like 'giving', really. As you've probably found yourself, commenting or giving advice can be a double-plus good (with apologies to Mr Orwell!). Hopefully, you can make someone else feel better and less isolated. And it takes you out of your own pit for a while.
Don't feel bad about having a down day......had one of those myself yesterday...but perked up a bit in the evening.....and still bouncing along the bottom rung today....
Mr Tom....you don't just have to share with us the upbeat, strong and sparkly bits of yourself....unless you feeling too vulnerable right now....you seem to always give so much of yourself to everyone in this community...I'm surprised that there is anything left of you...you must be knackered!!
Sadly, such is the case for so, so many people in our society. I think if we saw the true scale of it, we probably wouldn't feel so alone. I'm in touch with people around the world, via social media, who share similar situations through mental illness, physical disability, and people in the LGBTQ community - just to name a few. I have a friend, still quite young, who is extremely bright, intelligent and beautiful - and she's suffered so much for so many years with mental health problems. She's been unable to work for many years, since leaving university. She taught English in Pakistan for a while. But then things broke down and she couldn't cope any longer. Since then, she's had probably eighteen years of being pushed from pillar to post with social services and the DWP between them. Having to fight her corner with ever-decreasing energy reserves. She's an extremely unwell woman - yet on the surface seems bright, well and able. 'Invisible illness' syndrome. And a huge part of her struggle is being stigmatised, and simply not taken seriously. Not being properly listened to and understood. It's a cruel world for such people in so many ways that it doesn't surprise me when people no longer want to put up with it. Sorry... downbeat. Not having a good day. Wasn't going to come here until I saw these posts. Keep your chin up, folks.